RLS and other sleep disorders

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peanut1
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Joined: Sat Jun 04, 2011 8:06 am

RLS and other sleep disorders

Post by peanut1 »

There are times I can somehow get the RLS to calm down and I'm still wide awake as if I took an amphetamine. I always thought this was part of the RLS, but my doctor (william ondo, RLS quality specialist) is saying this is something else and was honest enough to say he didn't know what it was. Whatever this is, I'm wondering if it's exacerbating the RLS. And how would I go about figuring it out? Not sure.

Rustsmith
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Re: RLS and other sleep disorders

Post by Rustsmith »

Excellent question about how to figure that out. Unfortunately, I have no ideas, especially if Dr Ondo is at a loss since he would be more likely to know than any of us.
And I have the same issue at times. I will go to bed and immediately know that this will be another sleepless night. Often my legs are not that bad, but somehow I know that I will be up all night.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

peanut1
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Re: RLS and other sleep disorders

Post by peanut1 »

Steve,

"Often my legs are not that bad, but somehow I know that I will be up all night."

That is interesting. I wonder if most of us have some sort of secondary condition that kicked the RLS into severe mode OR is exacerbating it at the very least. I wonder if this secondary condition of mine be why I can't take the methadone. I also know that sometimes too much iron aggravates the RLS and not enough makes it go nuts too. Makes me wonder if there could be could be a GI/gut issue. I look forward to talking to Dr. Ondo about these questions next month. I've also thought of going to a functional medicine doctor to help me answer that question, but am not sure if I want to take that road yet. It is an expensive road to go down.

Rustsmith
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Re: RLS and other sleep disorders

Post by Rustsmith »

I have tried to convince my doctor to do some testing because I feel that there are things that are somewhat associated with my RLS that deviate from the normal symptoms. I haven't been able to persuade her yet, but may have made some progress last week. I had a bad reaction to an oral nail fungus med that caused symptoms that were strikingly like RLS (severe insomnia to the tune of 12 yrs sleep over 4 days and a constant need to move). However, it was strange in that none of my normal work-arounds (like soaking in hot water or walking the neighborhood late at night) did anything to my need to move. That has never happened before, not during augmentation nor during opioid withdrawal when my RLS was untreated. I am hoping that she is beginning to get an idea of what I was talking about when I last broached the subject.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: RLS and other sleep disorders

Post by ViewsAskew »

Rustsmith wrote:
Wed Oct 14, 2020 12:09 am
I have tried to convince my doctor to do some testing because I feel that there are things that are somewhat associated with my RLS that deviate from the normal symptoms. I haven't been able to persuade her yet, but may have made some progress last week. I had a bad reaction to an oral nail fungus med that caused symptoms that were strikingly like RLS (severe insomnia to the tune of 12 yrs sleep over 4 days and a constant need to move). However, it was strange in that none of my normal work-arounds (like soaking in hot water or walking the neighborhood late at night) did anything to my need to move. That has never happened before, not during augmentation nor during opioid withdrawal when my RLS was untreated. I am hoping that she is beginning to get an idea of what I was talking about when I last broached the subject.
Oh, my! What do you think it might be?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Location: Colorado Springs, Colorado

Re: RLS and other sleep disorders

Post by Rustsmith »

I have no idea. All that I know is that I am suddenly susceptible to all sorts of side effects to meds that cross the blood-brain barrier and because of the chronic depression that I have experienced since I was in high school, I suspect that all this could be due to some sort of neurochemical imbalance that may or may not be associated with RLS or may be some sort of common denominator for a number of issues. The first time that I raised the issue of my RLS being somewhat different from what others experience, my doctor sort of dismissed it. But this last time I got the impression that she may be coming over to my way of thinking. First it was Wellbutrin (which I now understand because it is a close chemical cousin to meth) and now Lamasil, which so rarely causes restlessness that restlessness isn't often listed as a side effect in the reference files that doctors check. Two of these hyper-RLS side effect reactions that require extended use of extra opioids all within 12 months is starting to be very, very old.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: RLS and other sleep disorders

Post by badnights »

peanut wrote:There are times I can somehow get the RLS to calm down and I'm still wide awake as if I took an amphetamine. I always thought this was part of the RLS
I have get the same thing, lots. I was always torn between thinking it was opioid-induced hyper-alertness, and thinking it was part of the disease. The Johns Hopkins team has said hyper-alertness in RLS/WED is due to the excess glutamate in RLS/WED brains, but maybe they are referring to our daytime alertness, which is all out of proportion to the tiny amount of sleep we get, and not to the insomnia that seems to plague us.

As I look back on my pre-diagnosis, pre-medication days, my complaint was not of WED/RLS; it was of being tired all the time and not sleeping well. I described the sleep issue specifically, and I now recognize that I was describing sleep-maintenance insomnia. Since beginning opioids, I have definitely had opioid-induced alertness that lasts 3-4 hours at least, every freakin' night. And I have realized lately that I probably meet the criteria for Delayed Sleep Phase Disorder. Whether it has been caused by prolonged opioid use or was always lurking, I don't know.

Since the main complaint of WED/RLS patients is chronic lack of sleep, and that lack of sleep is what so dramatically reduces our quality of life, maybe you can suggest to Dr Ondo that he find some resources to study this problem.
Makes me wonder if there could be could be a GI/gut issue.
Has to be....
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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